The condition of little Filipek’s health has deteriorated lately but this boy has an enormous determination to live. The medicine Zavesca has been administered again in his treatment. How can we all help? By donating to the medicine and rehabilitation fund that enables him to stay in the best possible condition. We have just settled the invoice for his rehabilitation in November, thereby reducing the amount in the collection by 1200 Polish zloty today. We applaud everyone who contributed and wants to help our ward!

November 22, 2017

ANNOTATION OF THE FOUNDATION

The health condition of Filipek deteriorates. While this wonderful boy stayed briefly in a hospice his internal strength enabled him to go home again and be with his family today. But this dramatic struggle continues… Pneumonia… We need your support and thank you for this on-going assistance. From the collected funds, we have reduced the amount by 2451,50 Polish zloty today. This has paid for his nutrition and rehabilitation. We believe that we can still do something for Filipek and it depends substantially on your help!

October 19, 2017

ANNOTATION OF THE FOUNDATION

Filipek is having more and more problems with swallowing and taking in much needed nourishment. The disease progresses. His parents have decided to proceed with percutaneous endoscopic gastrostomy. Children`s Alzheimer has ruined the childhood of their son. It is an unimaginable drama, which has sadly tormented the Malinowski family from Lodz…

HOW CAN YOU HELP? By paying any amount into Filip`s collection, you can help enormously with the rehabilitation which is extremely important for keeping him in the best possible condition! Due to the fact that we have just settled the invoice for this treatment, the amount in the collection has now been reduced by 1250 Polish zloty as of today. We appreciate all your support and humbly request any further help you can give for this wonderful family!

September 20, 2017

ANNOTATION OF THE FOUNDATION:

Filipek has just been taking part in an experimental therapy which may be a light in the tunnel of a fatal disease. Presently, doctors have cancelled his medicine "Zavesca", but the collection still goes on because he still needs rehabilitation and his parents are unable to cover its costs. Paying for his rehabilitation, we have just expended the final funds from the first collection for him (775,80 Polish zloty) and we have reduced the present collection by 424,20 Polish zloty.

February 22, 2017

Annotation of the Foundation:

We increase the amount of collection for Filipek, on request of his family!

We are extremely grateful for any help that has already come from you for wonderful Filipek from Lodz, both domestically and abroad!!Today, on request of Filipek’s family, we increase the amount of collection - 100 000 Polish zloty.

Thanks to you, until now, our Foundation was able to raise funds for almost 6 doses of medicine that slows down the effects of children`s Alzheimer, it provides the boy with almost 9 months of treatment!!

100 000 Polish zloty - the additional amount of money from the collection, will help little Filipek to afford further rehabilitation. In case of not spending the whole sum of money, the boy will be provided with subsequent dose of medicine.

Thanks to you we managed to collect money for 2 doses of medicine for wonderful Filipek Malinowski from Lodz. It provides little Filipek with necessary treatment for 3 months!! Thank you!!!

Today (16.02.2017) our Foundation launches a new collection for the next 4 doses of medicine!! We will not let the boy die!!! We will not leave this family without help!!

We ask you for help!! Thank you with all our heart!!

His story:

27. 03.2013 is the date when our dreamy son Filip was born. All newborn tests went well but unfortunately after 3 months, it appeared that he had a subtly enlarged spleen. Filip was developing normally, started to walk by the first year of his life, however, compared to other children, he was slower, warier, did not run. With time his spleen started getting bigger and bigger but none of the doctors was able to find the cause of this problem. We started to worry, all the more after his second birthday when various trips and falls started to take place and our son did not speak much, only single words. When he was 3 the spleen was twice the size. After many traumatic situations,we received a referral for genetic testing to be carried out in The Children's Memorial Health Institute in Warsaw, where for the first time the suspicion of Niemann-Pick type C disease was suggested.

Unfortunately this diagnosis was confirmed.

Niemann-Pick type C disease, known as children’s Alzheimer, causes the brain to close down all life processes, ultimately leading to death. At present our son is not walking on his own, has problems with maintaining balance and motor coordination. He has frequent cataplexy attacks which means that during laughter he loses tonicity and limply falls to the ground. Filipek is a very optimistic child, he very often laughs, not realizing that this wonderful laugh might hurt him. His childhood is spent in sadness but the medicine – miglustat (Zavesca) that might slow down or even inhibit the process of illness has become available. Unfortunately it is not reimbursed in Poland. The price of its one packaging for less than 1,5 months (dose depends on body weight) costs about 25 thousand Polish zloty (11 323.23 Euro).

We have asked The Polish Health Ministry for the reimbursement for the medicine but we were refused. The Institution, despite positive opinions of scientists, doctors and parents of children using Zavesca, is one of the few in Europe which does not allow for its refund, considering it to be ineffectual.

Filip`s disease is constantly proceeding – only in August of this year he was walking on his own and playing on a beach but now he has to be led, his knees shake and he is tiring quickly. He has sleeping disorders, problems with swallowing and immunodeficiency. We still hope that while referring to the issue of the medicine something will change in this country. But will our son be able to wait until to that moment?

Helplessness, powerlessness and the feeling of injustice regarding Filip`s disease are the worst things that we experience now. We have less and less time, we do not want to give up and passively wait for the end of his life, so due to this we appeal to all people with sensitive hearts and ask them for even the smallest help, for every penny, for a chance for our Filip for his future possible life, thanks to the medicine Zavesca.